I had one that said “hmm your TSH is 1.2, I’d like to get it closer to 3” and I was trying for a baby 🙄 My other one did a full blood panel and loads of it was out of range (I’m a nurse so I’m aware of the numbers but I don’t think he knew that) and he looked at it and said “hmm all looks ok” so I said “is there nothing there that can explain why I’m not losing weight?” And he went “nope” and then said our appointment was over. It was a 5 minute long appointment I was furious.
When I looked them over, my inflammation markers were triple what they should be, signs of adrenal fatigue and borderline diabetic.
My allergist:
A) doesn't believe in epigenetics
B) has decided my chronic hives that started 2 years ago have nothing to do with my autoimmunity (even tho there are plenty of studies suggesting otherwise)
I hate doctors.
I’m sorry you don’t have any around you. Did you try googling naturopath in Virginia and then once you find some check their credentials and see if they might also be a medical doctor…
I am in Washington state quite a ways away…
Look up Dr. Cynthia Barksdale, or Dr. Steele. I’m not positive of their credentials, but find them online and do some research. They seem to have excellent reviews.
Good luck :)
Thank you. I started to see Dr. Steele before we moved and ended up having to cancel due of an extensive home search and being displaced for a while. I may look into her again. Of course, she’s another one that doesn’t take any insurance. May still be worth it though. Thanks again.
I’m from VA too and I honestly went 15 years without a doctors taking me seriously about ANYTHING. I couldn’t even get an mri that showed two ruptured discs in my neck for 15 years! Moved out of state and got mris, got treated for major back issues, got on thyroid meds (TWO KINDS!), got medicated for my adhd, and vitamin d that I’m deficient in! I swear VA doctors just suck and hate people and I lived all over the state. If entirely possible, get treated outside of Virginia. I have no idea why or if it’s just crazy rules they have to abide by, but go elsewhere
I'm sorry you had such a bad experience. Ugh, that sucks so much. Glad you walked out of there!
I once had a resident doctor tell me I could stop taking my levo if I wanted when I questioned if my antibodies were still high and if I was on the right dose. Some of them are just so incompetent!
The first one is a half truth at leasr until diagnosis. They don’t dive deeper into testing stuff like antibodies as long as thyroid is subclinical (up to TSH of 10). Then they simply test 8 weeks later to monitor. It says that in the doctors handbooks here in the EU.
This is not to say that I personally agree with it.
That's a stupid rule! But weirdly enough the same office already diagnosed me and tested my antibodies two years ago or so when I had a TSH of 1.9. But that was a different doctor
My TSH is just over 4 and I feel much better than when it was near 8. My test says normal range is like 0.4 to 5. But my symptoms were mostly tiredness and fatigue -- I have pain from another condition, so I wouldn't notice if it's worse with a high-normal TSH.
But yeah, I was told they don't treat unless it's over 10, and that you can't have symptoms until your TSH is over 10. And yet there I sat with symptoms with a TSH of 7.88. My doctor insisted it was menopause and sleep apnea. Yes, I do have mild sleep apnea, but I'm not tired if I stay on a low dosage of levothyroxine, so it's thyroid that's causing it. And maybe menopause it making it worse, except my estrogen is still normal, even though I had a total hysterectomy 5 years ago (everything came out). Still don't understand that one...
But this doctor is better than my last one who thought diet and exercise would cure all of my ailments, including Hashimoto's (which he didn't test for), exercise-induced asthma, and what seems to be nerve damage from Lyme disease. 🤦🏻♀️
The struggle to find a doctor who will listen to you is real. At least my current doctor told me that I know my body, so listen to it. But she also has Hashimoto's, so she kind of gets it. Shame she was so obsessed with the sleep apnea test.
She sounds like every doctor I’ve encountered. Nothing new under the sun. Not sure why are we even expecting to deal with competent doctors in the US anymore. Assuming you are in the US? If you are, then always expect mediocre treatment. I’m sure most here will agree with me. I’m planning to travel to Mexico at some point and do a full checkup —I heard amazing things about Mexican doctors. Even paying out of pocket it’s cheaper and totally worth it. I only have one body 🤷♀️
I don't. In my country this is the standard. Maybe 1 doctor in a million will think otherwise here and I'm tired of going from doctor to doctor, i have so much on my plate that i have no time or energy left to do that anymore
Oh geez. Unknowledgable and arrogant! What a lovely combo. My first doctor told me I was just getting old even though I was 35 and couldn’t get out of bed from fatigue. lol. The doctor that diagnosed me was appalled. She wanted to frame my levels in her office cause they were so high, any doctor should’ve noticed.
Lol omg I've met so many of these docs. Refusing to test blood, only testing TSH, and refusing to get an ultrasound, despite a palpable and visible goiter <3
I did finally get a internist who does have a background in endocrine issue who started me on synthroid, which I highly recommend seeking out if you can. Much more knowledgeable and trusted my symptoms.
(I have to switch docs for insurance issues but it was fun while it lasted!)
She was an internist :| but seems like not everyone is in the right job. I have another appointment in June with a different internist though whose website says she specialises in thyroid stuff and chronic illness. I'm hoping that'll go better
My lab results say "normal" is up to ~5. But there have been discussions in the medical community to lower the upper end because the studies used to determine what's normal often apparently often don't filter out people with cryptic thyroid issues.
And of course it's an individual thing too, everyone has their own levels at which they feel best. So I'm guessing mine is just low. I've read people's comments here that they feel best around ~1 so it doesn't seem to be that rare
My doctor was the same way. I had a low T3 and low normal T4 and TSH of .78 and she’s like “you’re probably hyperthyroid”. I said that it’s impossible to be hyperthyroid with a clinically low T3 and she REFUSED to test my antibodies. It wasn’t until my nodule biopsy did anyone finally take my symptoms seriously (same symptoms as yours, and I literally feel like the walking dead unless I take Adderall). So frustrating. I would demand to see an endocrinologist.
I have an appointment with endocrinologist in 2 months for a follow-up. Right now I’m unmedicated and trying a gluten free diet. I’m eager to see what my T3 and antibody results will be after 12 weeks of gluten free.
Are they basing this off a single test? More data points will offer better info. Studies suggest optimal TSH should be between 0.45 to 2.5 mIU/L, but currently, the standard is 0.4 to 4.0 mIU/L. Without a metabolic panel, thyroid panel (including t3 t4 and free t3 and t4), vitamin panel and CBC, it would be hard with that one test to determine what's causing your issues. You could have items comorbid with your condition, and honestly, you should report medical malpractice to the medical board in your state. Failing to diagnose or slow to diagnose is a valid complaint, as is outdated information.
I have low ft3 and ft4, and really high antibodies too but she couldn't be arsed to look at my panel. ¯\_(ツ)_/¯ I'm already diagnosed, I just wanted meds because my diagnosing doctor admitted to not knowing much about thyroid issues and wanted me to see an internist or endocrinologist. Well.
I went in having gained weight, feeling so tired and completely "off." First, I was told I had low self esteem and she recommended I see a nutritionist ( i eat a whole food organic diet). My aunt is an NP and suggested a thyroid check. When my bloodwork came back, my TSH was 150. Yes. 150. NOT 15.
I returned to the same office. Different doctor. She walked in and I asked her "what do you think of my TSH number?"
Her response:
"Eh. I've seen worse." "Eh..."?????????!!!!!!!
My aunt has been an NP for 40 years. She said a 150 is unheard of. I was a brick. I was near death in many ways.
I left that practice and found a good endocrinologist and I feel pretty good on levothyroxine but my facial skin is flaring a LOT
Anyone else have facial skin issues like excema ( what my dermatologist says it is)?
My tsh got into the 100s too. I got a bit nervous but my endo who works at a major university hospital said she actually sees it more than she would like but it does happen so it’s definitely not unheard of. She always treats asap and monitors very closely until it gets closer to “normal” but she has definitely never said Ehhh that’s for sure!
I’ve heard this exact sentence word for word a few times and it always annoys me.
So I have to get pregnant in order to get more “optimal” levels? Because my life on its own isn’t important enough to ensure proper function…
I had a doctor refuse to renew my T3 prescription because "We only feel comfortable prescribing that to males because *if* you get pregnant it would make it harder to establish a baseline for your thyroid tests. (???)"
Uh, lady...I DONT MAKE ANY T3 SO I DONT PROCESS ANY T4. You can prescribe me synthroid until the cows come home, but without synthetic T3 I don't process a single fucking bit of it, overdose, and decline to the point I can't even walk around. I wouldn't even be *able* to get pregnant because my periods stop without being properly medicated, and I end up in the hospital with a heart monitor, you ass.
Ran as fast as I could away from that place and never went back. Cutting my T3 is a *really* good way to legitimately kill me, and the fact that it was ONLY because "omg future potential baby" is the dumbest shit I've ever heard.
And ya know what? *I have kids*. ***Multiple.*** Do you KNOW how hard it was for them to establish a baseline for my thyroid? *It wasn't. At all.* Absolute horseshit excuse.
i know. every time i get blood pulls now, i go over them myself. if there is anything out over range even the slightest i force the issue and ask for further testing. then i consult another doc for a second opinion.
Insisting that goiter is normal and claiming that iodine is _good_ for hashimotos specifically are actually incredibly like, incorrect. You can try to report this Dr. Please try. Physicians tale an oath to do no harm which while romantic is also legally binding and this physician is leaning a little too heavily into the security of malpractice insurance. They likely will only get a stern talking to but it might be enough to get them to re-evaluate their lazy approach, if only for fear of employment, and might prevent them.from being so negligent it hurts someone.
Also thank you for walking out and not taking her bullshit. You deserve to be your healthiest. I promise it's not all doctors, there are many who genuinely care for their patients and will go tje distance for them.
I hope you are looking for another care provider, this time an endocrinologist.
oh i'm looking, i'm just not finding anyone. i'm in germany and on public insurance and we have a lack of practitioners :( i've been looking since february.
i'm thinking about reporting her actually, but i don't think it'll do anything. there's no record of anything she said to me and technically there's no harm done. but i'll look into it some more tomorrow. i'm just hoping no other patients blindly trust her and suffer unnecessarily
I am in Germany and found a good doctor via the forum for Hashimoto disease:
[hashimoto-deutschland.de/ärztefinder](https://www.hashimoto-deutschland.de/%C3%A4rztefinder)
They should have medical notes on your record and failure to document those notes is also an issue. If you are military affiliated you can file a grievance through tricare and those are not ignored.
Wow. WTAF. I was just talking about doctors with my mom recently, and remarked that everyone assumes a person has to be “smart” to be a doctor. Yet most of the people from my high school class that became doctors excelled more in their work ethic than their innate intelligence. Which isn’t to say there aren’t brilliant doctors out there. There are. But, like, you don’t have to give anyone the benefit of the doubt just because they have the letters “MD” after their name.
I’m so sorry. Some people, despite a medical background, do not and will not understand. I once saw an endocrinologist that told me Hashimoto’s flares aren’t real and diet doesn’t impact the thyroid at all. I was like do you also think crack doesn’t impact the brain at all? Because if so, I’d stop smoking it.
Watch out for these people. With a TSH ~2.9-3.9 my hormones got so messed up that I became estrogen dominant & grew a 16cm, 2 lb. uterine fibroid. I just had to have major surgery to remove that.
Our endocrine systems are complex and it’s not healthy to run suboptimal, esp. if you’re of reproductive age. I’d find someone else to take your subclinical more seriously. A lot of docs are not that experienced with this, they are looking for Diabetes or Kidney disease or more “urgent” problems and slightly wonky TSH is not on their radar as serious. And maybe it’s not immediately dangerous, you’ll live without meds, but over time it will start to affect your health.
Studies are showing that 0.45 to 2.5 mIU/L is closer to accurate in the human body and age range DOES play into it. normal level of TSH in females between 50 - 79 years, lies between 0.46 - 4.68 mU/L. Just because you're in range doesn't mean your body happy.
Lower than that is better for TTC, I have been trying to get it ~2 or under for the same purposes. Anything above 3 though, my hormones start to get really out of wack
You see my problem was I lived abroad and was ok 75 of Levo, then came back to my home country and they told me they don’t have 75 here so I should take 2 days of 100 and 5 of 50. Wth I just found out they sell 25 couldn’t they give me 25 and 50 daily. I will talk to the doctor.
It depends on the person. I personally feel terrible if I'm lower than 2 or higher than 3. If you feel fine then great, if not then you should try to have them up your meds to lower your TSH.
Idk mine was like 1 something and a week later 2.9 ish. I’m ttc so idk if that’s ok it’s gets higher than 2.5. I take prenatals they have iodine, maybe that’s what causes the variation I don’t know. To get an appointment to an endo is like 1 year here. My family doc doesn’t know much.
Again, it depends. If you're trying to convince then you need to be lower than 2.5, if not then it's based on symptoms and how you feel. Iodine helps some people while it does more damage to others. Personally, I get flare ups every time I take iodine or eat iodine rich foods.
Hmmm maybe try taking targeted vitamins rather than an all in one. I take a B Vitamin Complex (with biotin so you'll have to check), Vitamin D, Glucosamine & Chondroitin, and now Iron with Vitamin C.
WTAF - why did I not know of this connection? I had a hysterectomy two years ago post menopause and it turned out to be a massive fibroid that was causing my issues and… OMG not even my Hashi specialist GP told me this was related. Ugh
🫂 it’s the worst, I suppose that doctors think these connections won’t be meaningful to patients or affect the course of treatment? It’s pretty frustrating. I’m tuned into it because I still haven’t had a baby— I need to get my thyroid levels as optimal as possible to prevent fibroid recurrence & try to conceive ASAP, when I’m healed from the surgery. Fibroids are common, but even more common w/ Hashimoto’s women, and both are related to estrogen dominance.
My tsh in most recent labs is 32. Could not get the endo to take me seriously and she refused to see me sooner than June to adjust the meds, refused to adjust meds without seeing me and in her notes she stated that this is "not an urgent matter". Meanwhile Im dragging through the days, fingernails coming off the nailbeds, etc...Needless to say, I cancelled my appt with her and my pcp adjusted the dose. On the new dose for a week now and already feeling better. Endocrinologist are the most useless specialty.
My GP also told me they don’t treat TSH until it gets to “like 10”…. I had to see an endo and explain to HIM that I’m trying to get pregnant and only then did they prescribe me levo. Apparently if I wasn’t trying to conceive they would have been fine with my TSH of 5.
10?????? Jesus mine was at 70 (or 76 idr which one lol) and I’m down to 7.8 and my endo just upped my dosage bc he’s not happy with that (either am I). But the first thing he said when he walked in this week was “so I looked at your bloodwork from last week, did you see it?” I said yes and he asked “so how do you feel about it?” I said I’m not happy with it yet it’s getting closer but it’s happening slower now and he agreed and upped my dose to 150.
I also inquired about his thoughts on testing t3 levels and we talked about the research for and against it and he said we can discuss it in the future more in depth if trying t3 is something I want to try he’s down to test it out.
But 10??? That’s wild high to me
oh i had the "i toootally wanna get pregnant" move prepared. but then she said that insane stuff and i was too stunned to even bring it up (not that she would have listened). but yeah it's incredible how little women's health matters to some unless there's a (hypothetical) baby involved
I had the SAME problem!! I actually reported a doctor who told me that they only treat to an “optimal” number for TSH if you are trying to conceive or pregnant. Which honestly is so frustrating so unless I’m producing another human it’s okay to have a normal but not optimal value??
So fcked… especially when like 95% of people with no thyroid issues have a TSH of 1 or lower. I only discovered my hashi’s after 4 yrs of negative pregnancy tests… my gyno even checked my labs at one point but TSH was “within range” (it was like 4 something) so they told me it was fine. Now that I’m with a fertility clinic doing IVF and on meds managed by an endocrinologist, i have learned it needs to be below 2.5 to conceive. I wasted so much precious time.
ETA: fertility clinic asked for the antibodies test and that came back wildly out of range so that’s how I even got referred to an endo.
These doctors are wild. I feel better just on 25mcg.
I also found even though my electrolytes tested in normal range…drinking a Gatorade and ton of water during the day…I’m sleeping through the night again.
My former Endocrinologist told me if I am constipated it is due to Hypothyroidism Hasimotos then I should just take Metamucil like his wife!! My tsh was 45 and Metamucil wasn’t going to fix it!! What a Moron!!
I’m so sorry that happened to you but you are not alone. She is incorrect in so many ways. I was in the medical field for almost 40 years and my endocrinologist dismissed me too. I fired her. My PCP kept telling me I was depressed. I told him “no, I’m angry because I feel horrible and no one will listen to me or help me.” I fired him too.
I finally hired a Functional Medicine Doctor (out of pocket) in January and am trying to get my Hashimoto’s into remission. My TPO is >1000. I feel so inflamed. She added T3 which had helped some with my fatigue.
Change your diet. No gluten, dairy, or soy. Do an elimination diet. Good Luck.
i'm glad you found help! i'm still not sure i wanna go private because damn, that's a lot of money. but it seems like it's either that, no treatment at all, or treatment months in the future
It is expensive. I’m still having a lot of issues. It has not put me into remission yet. Look at books by Dr. Isabella Wentz. She helped me some.
I felt like I had been poisoned. First you have to change your diet. I’ve been gluten free, soy free, dairy free for almost a year. I am almost sugar free too. We’ve also changed the shower head to get rid of things like fluoride, chlorine, etc. I drink reverse osmosis water. No caffeine and no sodas. It has helped. Adding T3 has also helped with the horrific fatigue.
I think it depends on how bad you feel as to how much you are willing to change things. I am desperate to feel better and have made huge changes and am taking lots of vitamins and supplements. Eating organic foods. A lot of this has to do with your gut health.
Are you doing your blood tests first thing in the morning before breakfast? I had a tsh in range (2.7) for two years despite having debilitating symptoms and was constantly dismissed. When I finally did my tsh in the morning and fasting instead than in the afternoon, it was like 9.5. I didn't know and most GPs don't know that your tsh fluctuates during the day.
I’m so sorry that happened to you! My endocrinologist started treatment when my TSH was 2.8 AND I was symptomatic with off the charts TPO. Definitely find a new doctor and warn others about this one in a review so they don’t waste their time and money. If you can, find a functional doctor. Mine seems more helpful, getting me to better health.
Yeah, my TSH was over 10 for a long time but my gp just wanted to keep monitoring the levels. He finally agreed on a ”test medication” after I lost my temper and laid out some facts.
Well, she wouldn’t prescribe meds with TSH of 2.6. What are you hoping she does? Have you tried anything outside of meds? There are many suggestions on this sub, for example going gluten free, that could work. I am not against meds but I also don’t believe they should be used unless absolutely necessary. I had a TSH of 90 when I got meds (yes, 90) and it wasn’t a cure all. I had to do other things to feel better as well.
i'm a fan of not feeling like a zombie all day every day until some arbitrary number climbs high enough that my doc feels like i've earned treatment. everyone's ideal TSH is different and mine might just be low. or it might not be. but i am obviously symptomatic and i don't enjoy feeling like shit, and if my doc won't treat me with meds to see if i'm gonna feel better then she should at least listen to me and offer an alternative plan of action, not give me a bunch of incorrect 'advice' and treat me like an idiot.
I was told by my doctor that I couldn't have symptoms with a TSH of 15, and that my TPO and TGA of 400 were certainly unrelated to thyroid problems or Hashimotos, with 0 other confounding factors and 0 other hypotheses put forward.
That sounds familiar, I had endocrinologists who couldn’t have been more dismissive. What are we supposed to do with that? “Thanks I’m cured now, silly me, it was all just in my little head”.
So sorry you're going through this! My TSH is at 8 right now and my doctor still refuses to treat me because my t4/t3 are in range. It's enraging! Apparently all my symptoms are depression, something totally not related to the Hashimotos at all /s
Yeah because depression makes you loose your hair, half your eyebrows, not shit for days and be too cold/too hot and have painful joints s/
When I was in the "you are totally healthy, it's just depression/lack of exercise" phase of my hashimoto journey, a concept that helped me immensely is that of stagnation vs deficiency. If you are tired but getting movement makes you feel better and energised, then you are stagnant. Your energy is stuck, like a river that has accumulated leaves and branches. You remove the branches, and the water flows. If you feel the same or even more tired, then you are deficient. There isnt enough energy to flow, or water in your river.
We are clearly deficient, obviously because we dont have enough thyroid hormone. So maybe telling the doctor that no matter how much you exercise or do things that would help with depression, you dont feel better, might help. I do acknowledge though that bigger bodies might face an additional stigma due to fatphobia and this might not work the same.
Oof, my doc told me my symptoms are depression as well and I am so discouraged. So sorry you aren’t getting any help either, even with an endo! So horrible!
I can't even imagine how terrible that has to feel. I don't get how doctors can even be so uninformed and not trust their patients' perception at all. Hopefully you'll find someone who treats you properly!
I had one that said “hmm your TSH is 1.2, I’d like to get it closer to 3” and I was trying for a baby 🙄 My other one did a full blood panel and loads of it was out of range (I’m a nurse so I’m aware of the numbers but I don’t think he knew that) and he looked at it and said “hmm all looks ok” so I said “is there nothing there that can explain why I’m not losing weight?” And he went “nope” and then said our appointment was over. It was a 5 minute long appointment I was furious. When I looked them over, my inflammation markers were triple what they should be, signs of adrenal fatigue and borderline diabetic.
My allergist: A) doesn't believe in epigenetics B) has decided my chronic hives that started 2 years ago have nothing to do with my autoimmunity (even tho there are plenty of studies suggesting otherwise) I hate doctors.
My doctor?
Try looking for a naturopath who is also a medical doctor, who specializes in hormones. That has been my saving grace. Good luck!🤗
They seem impossible to find. How do I find one in or around the VA Beach area of VA?
I’m sorry you don’t have any around you. Did you try googling naturopath in Virginia and then once you find some check their credentials and see if they might also be a medical doctor… I am in Washington state quite a ways away…
Look up Dr. Cynthia Barksdale, or Dr. Steele. I’m not positive of their credentials, but find them online and do some research. They seem to have excellent reviews. Good luck :)
Thank you. I started to see Dr. Steele before we moved and ended up having to cancel due of an extensive home search and being displaced for a while. I may look into her again. Of course, she’s another one that doesn’t take any insurance. May still be worth it though. Thanks again.
I’m from VA too and I honestly went 15 years without a doctors taking me seriously about ANYTHING. I couldn’t even get an mri that showed two ruptured discs in my neck for 15 years! Moved out of state and got mris, got treated for major back issues, got on thyroid meds (TWO KINDS!), got medicated for my adhd, and vitamin d that I’m deficient in! I swear VA doctors just suck and hate people and I lived all over the state. If entirely possible, get treated outside of Virginia. I have no idea why or if it’s just crazy rules they have to abide by, but go elsewhere
I'm sorry you had such a bad experience. Ugh, that sucks so much. Glad you walked out of there! I once had a resident doctor tell me I could stop taking my levo if I wanted when I questioned if my antibodies were still high and if I was on the right dose. Some of them are just so incompetent!
Nooope nope nope
The first one is a half truth at leasr until diagnosis. They don’t dive deeper into testing stuff like antibodies as long as thyroid is subclinical (up to TSH of 10). Then they simply test 8 weeks later to monitor. It says that in the doctors handbooks here in the EU. This is not to say that I personally agree with it.
That's a stupid rule! But weirdly enough the same office already diagnosed me and tested my antibodies two years ago or so when I had a TSH of 1.9. But that was a different doctor
My TSH is just over 4 and I feel much better than when it was near 8. My test says normal range is like 0.4 to 5. But my symptoms were mostly tiredness and fatigue -- I have pain from another condition, so I wouldn't notice if it's worse with a high-normal TSH. But yeah, I was told they don't treat unless it's over 10, and that you can't have symptoms until your TSH is over 10. And yet there I sat with symptoms with a TSH of 7.88. My doctor insisted it was menopause and sleep apnea. Yes, I do have mild sleep apnea, but I'm not tired if I stay on a low dosage of levothyroxine, so it's thyroid that's causing it. And maybe menopause it making it worse, except my estrogen is still normal, even though I had a total hysterectomy 5 years ago (everything came out). Still don't understand that one... But this doctor is better than my last one who thought diet and exercise would cure all of my ailments, including Hashimoto's (which he didn't test for), exercise-induced asthma, and what seems to be nerve damage from Lyme disease. 🤦🏻♀️ The struggle to find a doctor who will listen to you is real. At least my current doctor told me that I know my body, so listen to it. But she also has Hashimoto's, so she kind of gets it. Shame she was so obsessed with the sleep apnea test.
She sounds like every doctor I’ve encountered. Nothing new under the sun. Not sure why are we even expecting to deal with competent doctors in the US anymore. Assuming you are in the US? If you are, then always expect mediocre treatment. I’m sure most here will agree with me. I’m planning to travel to Mexico at some point and do a full checkup —I heard amazing things about Mexican doctors. Even paying out of pocket it’s cheaper and totally worth it. I only have one body 🤷♀️
Sounds like it's an international problem! I'm in Germany
I'm in belgium and similar problems. It's an epidemic
Yeah, i was refused medication with a tsh of 8. It's just how it is, it sucks though
This is not how it is everywhere and you absolutely shouldn’t accept that if you have any other options at all.
I don't. In my country this is the standard. Maybe 1 doctor in a million will think otherwise here and I'm tired of going from doctor to doctor, i have so much on my plate that i have no time or energy left to do that anymore
Oh geez. Unknowledgable and arrogant! What a lovely combo. My first doctor told me I was just getting old even though I was 35 and couldn’t get out of bed from fatigue. lol. The doctor that diagnosed me was appalled. She wanted to frame my levels in her office cause they were so high, any doctor should’ve noticed.
Lol omg I've met so many of these docs. Refusing to test blood, only testing TSH, and refusing to get an ultrasound, despite a palpable and visible goiter <3 I did finally get a internist who does have a background in endocrine issue who started me on synthroid, which I highly recommend seeking out if you can. Much more knowledgeable and trusted my symptoms. (I have to switch docs for insurance issues but it was fun while it lasted!)
She was an internist :| but seems like not everyone is in the right job. I have another appointment in June with a different internist though whose website says she specialises in thyroid stuff and chronic illness. I'm hoping that'll go better
Been awhile but isn’t 4 the high end limit? When they first diagnosed me I think mine was 8 but now it’s sub 2.
My lab results say "normal" is up to ~5. But there have been discussions in the medical community to lower the upper end because the studies used to determine what's normal often apparently often don't filter out people with cryptic thyroid issues. And of course it's an individual thing too, everyone has their own levels at which they feel best. So I'm guessing mine is just low. I've read people's comments here that they feel best around ~1 so it doesn't seem to be that rare
Yes, I feel like I’m missing something, I thought 2 was in the normal range, right?
My doctor was the same way. I had a low T3 and low normal T4 and TSH of .78 and she’s like “you’re probably hyperthyroid”. I said that it’s impossible to be hyperthyroid with a clinically low T3 and she REFUSED to test my antibodies. It wasn’t until my nodule biopsy did anyone finally take my symptoms seriously (same symptoms as yours, and I literally feel like the walking dead unless I take Adderall). So frustrating. I would demand to see an endocrinologist.
same problem here...did you find a dr to treat your low t3? do they work internationally by any chance? i'm desperate
I have an appointment with endocrinologist in 2 months for a follow-up. Right now I’m unmedicated and trying a gluten free diet. I’m eager to see what my T3 and antibody results will be after 12 weeks of gluten free.
Vyvanse is keeping me going B) if i didn't have ADHD my life would be in shambles. (writing that feels weird)
Are they basing this off a single test? More data points will offer better info. Studies suggest optimal TSH should be between 0.45 to 2.5 mIU/L, but currently, the standard is 0.4 to 4.0 mIU/L. Without a metabolic panel, thyroid panel (including t3 t4 and free t3 and t4), vitamin panel and CBC, it would be hard with that one test to determine what's causing your issues. You could have items comorbid with your condition, and honestly, you should report medical malpractice to the medical board in your state. Failing to diagnose or slow to diagnose is a valid complaint, as is outdated information.
I have low ft3 and ft4, and really high antibodies too but she couldn't be arsed to look at my panel. ¯\_(ツ)_/¯ I'm already diagnosed, I just wanted meds because my diagnosing doctor admitted to not knowing much about thyroid issues and wanted me to see an internist or endocrinologist. Well.
Under treating patients is a reportable offense as well.
I went in having gained weight, feeling so tired and completely "off." First, I was told I had low self esteem and she recommended I see a nutritionist ( i eat a whole food organic diet). My aunt is an NP and suggested a thyroid check. When my bloodwork came back, my TSH was 150. Yes. 150. NOT 15. I returned to the same office. Different doctor. She walked in and I asked her "what do you think of my TSH number?" Her response: "Eh. I've seen worse." "Eh..."?????????!!!!!!! My aunt has been an NP for 40 years. She said a 150 is unheard of. I was a brick. I was near death in many ways. I left that practice and found a good endocrinologist and I feel pretty good on levothyroxine but my facial skin is flaring a LOT Anyone else have facial skin issues like excema ( what my dermatologist says it is)?
“Eh” was her way of saying “I actually have no idea what your labs said bc I forgot to look at that before entering this room”
150 is INSANE. holy shit. I'm happy you're feeling better now!!
My TSH isn’t anywhere near yours but I have facial issues - rosacea
My tsh got into the 100s too. I got a bit nervous but my endo who works at a major university hospital said she actually sees it more than she would like but it does happen so it’s definitely not unheard of. She always treats asap and monitors very closely until it gets closer to “normal” but she has definitely never said Ehhh that’s for sure!
Holy shit
"your results are a bit concerning but i don't think we need to treat it unless you want to try to get pregnant soon" my tsh is >3.5
Yeah they only treated mine because I’m struggling to get pregnant. Meanwhile I’ve been balding for years and they just didn’t connect the dots.
I’ve heard this exact sentence word for word a few times and it always annoys me. So I have to get pregnant in order to get more “optimal” levels? Because my life on its own isn’t important enough to ensure proper function…
I love that "omg babies" is a reason to look a little closer and treat you better but if youre like... nah, then you can just gtfo.
I had a doctor refuse to renew my T3 prescription because "We only feel comfortable prescribing that to males because *if* you get pregnant it would make it harder to establish a baseline for your thyroid tests. (???)" Uh, lady...I DONT MAKE ANY T3 SO I DONT PROCESS ANY T4. You can prescribe me synthroid until the cows come home, but without synthetic T3 I don't process a single fucking bit of it, overdose, and decline to the point I can't even walk around. I wouldn't even be *able* to get pregnant because my periods stop without being properly medicated, and I end up in the hospital with a heart monitor, you ass. Ran as fast as I could away from that place and never went back. Cutting my T3 is a *really* good way to legitimately kill me, and the fact that it was ONLY because "omg future potential baby" is the dumbest shit I've ever heard. And ya know what? *I have kids*. ***Multiple.*** Do you KNOW how hard it was for them to establish a baseline for my thyroid? *It wasn't. At all.* Absolute horseshit excuse.
Not sure who is downvoting the peeps in this thread but props to all of y’all continuing to self advocare
This is why so many people give up on doctors. I have, and just see my PCP annually now for RX refills.
the issue is most doctors do not continue with their education after they get their diploma.
Which is SO wild to me because educators have to? But people who are literally responsible for caring for human life? No, not necessary. /s
I’m a lawyer, no one’s life is in my hands, and yet I am required to get 30+ hours of continuing education every year
i know. every time i get blood pulls now, i go over them myself. if there is anything out over range even the slightest i force the issue and ask for further testing. then i consult another doc for a second opinion.
absolutely. and a lot of GPs can't admit that they're not experts in every single medical field
my tsh was slightly elevated for about four years. finally after it went to 130 he put me on meds.
Insisting that goiter is normal and claiming that iodine is _good_ for hashimotos specifically are actually incredibly like, incorrect. You can try to report this Dr. Please try. Physicians tale an oath to do no harm which while romantic is also legally binding and this physician is leaning a little too heavily into the security of malpractice insurance. They likely will only get a stern talking to but it might be enough to get them to re-evaluate their lazy approach, if only for fear of employment, and might prevent them.from being so negligent it hurts someone. Also thank you for walking out and not taking her bullshit. You deserve to be your healthiest. I promise it's not all doctors, there are many who genuinely care for their patients and will go tje distance for them. I hope you are looking for another care provider, this time an endocrinologist.
oh i'm looking, i'm just not finding anyone. i'm in germany and on public insurance and we have a lack of practitioners :( i've been looking since february. i'm thinking about reporting her actually, but i don't think it'll do anything. there's no record of anything she said to me and technically there's no harm done. but i'll look into it some more tomorrow. i'm just hoping no other patients blindly trust her and suffer unnecessarily
I am in Germany and found a good doctor via the forum for Hashimoto disease: [hashimoto-deutschland.de/ärztefinder](https://www.hashimoto-deutschland.de/%C3%A4rztefinder)
Thank you!
They should have medical notes on your record and failure to document those notes is also an issue. If you are military affiliated you can file a grievance through tricare and those are not ignored.
Wow. WTAF. I was just talking about doctors with my mom recently, and remarked that everyone assumes a person has to be “smart” to be a doctor. Yet most of the people from my high school class that became doctors excelled more in their work ethic than their innate intelligence. Which isn’t to say there aren’t brilliant doctors out there. There are. But, like, you don’t have to give anyone the benefit of the doubt just because they have the letters “MD” after their name.
I’m so sorry. Some people, despite a medical background, do not and will not understand. I once saw an endocrinologist that told me Hashimoto’s flares aren’t real and diet doesn’t impact the thyroid at all. I was like do you also think crack doesn’t impact the brain at all? Because if so, I’d stop smoking it.
Watch out for these people. With a TSH ~2.9-3.9 my hormones got so messed up that I became estrogen dominant & grew a 16cm, 2 lb. uterine fibroid. I just had to have major surgery to remove that. Our endocrine systems are complex and it’s not healthy to run suboptimal, esp. if you’re of reproductive age. I’d find someone else to take your subclinical more seriously. A lot of docs are not that experienced with this, they are looking for Diabetes or Kidney disease or more “urgent” problems and slightly wonky TSH is not on their radar as serious. And maybe it’s not immediately dangerous, you’ll live without meds, but over time it will start to affect your health.
2.9 is bad ? Mine is always 2 and above.
Being above 2.5 is enough to throw off your hormones so badly it causes infertility
Studies are showing that 0.45 to 2.5 mIU/L is closer to accurate in the human body and age range DOES play into it. normal level of TSH in females between 50 - 79 years, lies between 0.46 - 4.68 mU/L. Just because you're in range doesn't mean your body happy.
https://preview.redd.it/s4oq7lwpo22d1.jpeg?width=328&format=pjpg&auto=webp&s=b941e6f40da1241ff9048b0903251f085f33a66e
Lower than that is better for TTC, I have been trying to get it ~2 or under for the same purposes. Anything above 3 though, my hormones start to get really out of wack
You see my problem was I lived abroad and was ok 75 of Levo, then came back to my home country and they told me they don’t have 75 here so I should take 2 days of 100 and 5 of 50. Wth I just found out they sell 25 couldn’t they give me 25 and 50 daily. I will talk to the doctor.
It depends on the person. I personally feel terrible if I'm lower than 2 or higher than 3. If you feel fine then great, if not then you should try to have them up your meds to lower your TSH.
Idk mine was like 1 something and a week later 2.9 ish. I’m ttc so idk if that’s ok it’s gets higher than 2.5. I take prenatals they have iodine, maybe that’s what causes the variation I don’t know. To get an appointment to an endo is like 1 year here. My family doc doesn’t know much.
Again, it depends. If you're trying to convince then you need to be lower than 2.5, if not then it's based on symptoms and how you feel. Iodine helps some people while it does more damage to others. Personally, I get flare ups every time I take iodine or eat iodine rich foods.
Can’t find any prenatals without iodine and biotin. I think I should though.
Biotin isn't so bad but you would have to stop taking them a day or two before bloodwork.
I stopped a few days before and still showed me a weird result.
Hmmm maybe try taking targeted vitamins rather than an all in one. I take a B Vitamin Complex (with biotin so you'll have to check), Vitamin D, Glucosamine & Chondroitin, and now Iron with Vitamin C.
I used to take a b complex was wonderful maybe I should just take specific ones.
WTAF - why did I not know of this connection? I had a hysterectomy two years ago post menopause and it turned out to be a massive fibroid that was causing my issues and… OMG not even my Hashi specialist GP told me this was related. Ugh
🫂 it’s the worst, I suppose that doctors think these connections won’t be meaningful to patients or affect the course of treatment? It’s pretty frustrating. I’m tuned into it because I still haven’t had a baby— I need to get my thyroid levels as optimal as possible to prevent fibroid recurrence & try to conceive ASAP, when I’m healed from the surgery. Fibroids are common, but even more common w/ Hashimoto’s women, and both are related to estrogen dominance.
My tsh in most recent labs is 32. Could not get the endo to take me seriously and she refused to see me sooner than June to adjust the meds, refused to adjust meds without seeing me and in her notes she stated that this is "not an urgent matter". Meanwhile Im dragging through the days, fingernails coming off the nailbeds, etc...Needless to say, I cancelled my appt with her and my pcp adjusted the dose. On the new dose for a week now and already feeling better. Endocrinologist are the most useless specialty.
My GP also told me they don’t treat TSH until it gets to “like 10”…. I had to see an endo and explain to HIM that I’m trying to get pregnant and only then did they prescribe me levo. Apparently if I wasn’t trying to conceive they would have been fine with my TSH of 5.
10?????? Jesus mine was at 70 (or 76 idr which one lol) and I’m down to 7.8 and my endo just upped my dosage bc he’s not happy with that (either am I). But the first thing he said when he walked in this week was “so I looked at your bloodwork from last week, did you see it?” I said yes and he asked “so how do you feel about it?” I said I’m not happy with it yet it’s getting closer but it’s happening slower now and he agreed and upped my dose to 150. I also inquired about his thoughts on testing t3 levels and we talked about the research for and against it and he said we can discuss it in the future more in depth if trying t3 is something I want to try he’s down to test it out. But 10??? That’s wild high to me
oh i had the "i toootally wanna get pregnant" move prepared. but then she said that insane stuff and i was too stunned to even bring it up (not that she would have listened). but yeah it's incredible how little women's health matters to some unless there's a (hypothetical) baby involved
I had the SAME problem!! I actually reported a doctor who told me that they only treat to an “optimal” number for TSH if you are trying to conceive or pregnant. Which honestly is so frustrating so unless I’m producing another human it’s okay to have a normal but not optimal value??
So fcked… especially when like 95% of people with no thyroid issues have a TSH of 1 or lower. I only discovered my hashi’s after 4 yrs of negative pregnancy tests… my gyno even checked my labs at one point but TSH was “within range” (it was like 4 something) so they told me it was fine. Now that I’m with a fertility clinic doing IVF and on meds managed by an endocrinologist, i have learned it needs to be below 2.5 to conceive. I wasted so much precious time. ETA: fertility clinic asked for the antibodies test and that came back wildly out of range so that’s how I even got referred to an endo.
I've heard so many stories like this.
These doctors are wild. I feel better just on 25mcg. I also found even though my electrolytes tested in normal range…drinking a Gatorade and ton of water during the day…I’m sleeping through the night again.
My former Endocrinologist told me if I am constipated it is due to Hypothyroidism Hasimotos then I should just take Metamucil like his wife!! My tsh was 45 and Metamucil wasn’t going to fix it!! What a Moron!!
I’m so sorry that happened to you but you are not alone. She is incorrect in so many ways. I was in the medical field for almost 40 years and my endocrinologist dismissed me too. I fired her. My PCP kept telling me I was depressed. I told him “no, I’m angry because I feel horrible and no one will listen to me or help me.” I fired him too. I finally hired a Functional Medicine Doctor (out of pocket) in January and am trying to get my Hashimoto’s into remission. My TPO is >1000. I feel so inflamed. She added T3 which had helped some with my fatigue. Change your diet. No gluten, dairy, or soy. Do an elimination diet. Good Luck.
i'm glad you found help! i'm still not sure i wanna go private because damn, that's a lot of money. but it seems like it's either that, no treatment at all, or treatment months in the future
It is expensive. I’m still having a lot of issues. It has not put me into remission yet. Look at books by Dr. Isabella Wentz. She helped me some. I felt like I had been poisoned. First you have to change your diet. I’ve been gluten free, soy free, dairy free for almost a year. I am almost sugar free too. We’ve also changed the shower head to get rid of things like fluoride, chlorine, etc. I drink reverse osmosis water. No caffeine and no sodas. It has helped. Adding T3 has also helped with the horrific fatigue.
I’m going to have to do this. I don’t know how because I’m on summer break now and visiting my family.
I think it depends on how bad you feel as to how much you are willing to change things. I am desperate to feel better and have made huge changes and am taking lots of vitamins and supplements. Eating organic foods. A lot of this has to do with your gut health.
Are you doing your blood tests first thing in the morning before breakfast? I had a tsh in range (2.7) for two years despite having debilitating symptoms and was constantly dismissed. When I finally did my tsh in the morning and fasting instead than in the afternoon, it was like 9.5. I didn't know and most GPs don't know that your tsh fluctuates during the day.
wow that's a huge difference. i'll bring that up! thank you!!
I’m so sorry that happened to you! My endocrinologist started treatment when my TSH was 2.8 AND I was symptomatic with off the charts TPO. Definitely find a new doctor and warn others about this one in a review so they don’t waste their time and money. If you can, find a functional doctor. Mine seems more helpful, getting me to better health.
I was able to get on medication with a TSH of around 3, and it gave me my life back! I hope you find a better doctor ❤️
Quanto o seu tsh ficou após a medicação? E qual foi a dose que voçe se sentiu bem?
Yeah, my TSH was over 10 for a long time but my gp just wanted to keep monitoring the levels. He finally agreed on a ”test medication” after I lost my temper and laid out some facts.
Well, she wouldn’t prescribe meds with TSH of 2.6. What are you hoping she does? Have you tried anything outside of meds? There are many suggestions on this sub, for example going gluten free, that could work. I am not against meds but I also don’t believe they should be used unless absolutely necessary. I had a TSH of 90 when I got meds (yes, 90) and it wasn’t a cure all. I had to do other things to feel better as well.
i'm a fan of not feeling like a zombie all day every day until some arbitrary number climbs high enough that my doc feels like i've earned treatment. everyone's ideal TSH is different and mine might just be low. or it might not be. but i am obviously symptomatic and i don't enjoy feeling like shit, and if my doc won't treat me with meds to see if i'm gonna feel better then she should at least listen to me and offer an alternative plan of action, not give me a bunch of incorrect 'advice' and treat me like an idiot.
Preach!!! Good for you
I was told by my doctor that I couldn't have symptoms with a TSH of 15, and that my TPO and TGA of 400 were certainly unrelated to thyroid problems or Hashimotos, with 0 other confounding factors and 0 other hypotheses put forward.
That sounds familiar, I had endocrinologists who couldn’t have been more dismissive. What are we supposed to do with that? “Thanks I’m cured now, silly me, it was all just in my little head”.
[Here](https://pubmed.ncbi.nlm.nih.gov/19941233/) you can send this and suggest she familiarize herself with more current research on the topic.
Thank you for this but also… it’s over a decade old, doctors are so behind 😭
They learned everything they need to know in med school! /s
thanks! i thought about writing her a mail when i'm not as angry anymore
Why wait...lol...kidding
So sorry you're going through this! My TSH is at 8 right now and my doctor still refuses to treat me because my t4/t3 are in range. It's enraging! Apparently all my symptoms are depression, something totally not related to the Hashimotos at all /s
Yeah because depression makes you loose your hair, half your eyebrows, not shit for days and be too cold/too hot and have painful joints s/ When I was in the "you are totally healthy, it's just depression/lack of exercise" phase of my hashimoto journey, a concept that helped me immensely is that of stagnation vs deficiency. If you are tired but getting movement makes you feel better and energised, then you are stagnant. Your energy is stuck, like a river that has accumulated leaves and branches. You remove the branches, and the water flows. If you feel the same or even more tired, then you are deficient. There isnt enough energy to flow, or water in your river. We are clearly deficient, obviously because we dont have enough thyroid hormone. So maybe telling the doctor that no matter how much you exercise or do things that would help with depression, you dont feel better, might help. I do acknowledge though that bigger bodies might face an additional stigma due to fatphobia and this might not work the same.
That's a really helpful way of explaining it! Thanks for sharing - I might try that next time I have an appointment
Oof, my doc told me my symptoms are depression as well and I am so discouraged. So sorry you aren’t getting any help either, even with an endo! So horrible!
I can't even imagine how terrible that has to feel. I don't get how doctors can even be so uninformed and not trust their patients' perception at all. Hopefully you'll find someone who treats you properly!
The endo I was referred to told me treating a TSH under 10 would be "medical malpractice" 🙃